Karen Martin

I am very glad Pam asked the question and got Char’s response!  I have also heard that 3-5 year prediction and worried about it.  Of course, when you consider almost any disease and think about the ongoing progress in treatments, that is likely the case almost every time.  It is very reassuring to hear you “say” this right out loud here.  :)…[Read more]

Prati, if what you are describing is like a muscle cramp in your ribs, I have been having those for the last three plus years and no one can figure it out.  I also have hypothyroid and the doctor told me it might be linked to that, but it has only really been active since the IPF diagnosis, but even before I started taking Esbriet.  It is a real w…[Read more]

Hey, Charlene.  Sorry to hear about your problems.  I have dizziness from time to time also.  In some cases it can be caused by poor circulation or meds, but you can also have tiny crystals in the inner ear that cause movement in the fluid in your inner ear that makes you dizzy.  There are exercises you can do to help with that if you want to do…[Read more]

Mark, I am so sorry to hear you and your wife both dealt with COVID. I am glad to hear things are better now. Don’t beat yourself up too much for letting your guard down. I keep hearing about so many people catching this who I suspect have done their very best. There is still so much unknown about the virus that I think it is a wonder not more…[Read more]

Thank you, Char. I am not perfect in keeping this resolution. I have plenty of days when I feel the usual stresses of life, but I do try not to let them run my life as much as they used to do. I really love this forum and have learned a great deal from everyone here. Lets make the days ahead merry and bright!

My New Year’s resolution this year will be the same one I have made for many years now, and that is to do my best to always remember what is most important at any time. It is easy to get caught up in so many things in life, worrying, stressing and trying to do too much. After my husband had a leg amputated, I realized that there were many times…[Read more]

I don’t wear one and actually have never thought about getting one, which is probably pretty dumb of me. However, I question whether wearing one that doesn’t capture attention is a good idea because if you need help, what guarantee is there that emergency personnel would notice it? I understand not wanting to stand out in a crowd because of a…[Read more]

Kristie, I really like the look of the Oxy-tech canula. Will be looking into getting that for myself. In the meantime, I use a small binder clip on my tubing to attach it to the tail of my shirt or pants pocket to keep the weight of the tubing from dragging on my face. It is a big help.

I use oxygen 24/7. I have e-tanks and they get cold quickly, as does the tubing. I have tried putting the tubing under my coat to help warm the oxygen, but it can make moving around a little tricky. Not really looking forward to winter this year. I feel for you in Canada, Char.

I had a PFT done in late September and, because it was done at the hospital, I had to have a COVID test done the week before. The hospital set it up and it was done through a drive-thru set-up. Since I was cleared, I was allowed to have the PFT done the following week. Even in these times, you can still have tests done if you need them. Good…[Read more]

Gil,
From what I recall from this forum, appetite seems to be affected by the disease, whether or not you are on meds. When I mentioned that I still didn’t seem to be losing any weight, a friend pointed out that perhaps my body has decided I am “starving” and has kicked into preservation mode. Ain’t that a kick in the head?!

Enjoy that…[Read more]

Gil,
Maybe because I was the cook in the family for so many years it has lost some of its appeal. I understand what you are saying about the process sometimes being soothing, though. I have that sometimes. I will say that now and then I just go out and pick up something, too. My biggest problem seems to be that I rarely seem to have a taste…[Read more]

Hello, Mark. I always love hearing from you. These ideas sound interesting. I like the idea of keeping nuts, trail mix and other healthy items readily available. I find that just about anything I make becomes enough food for a couple of meals, which sometimes leads to boredom, but I think maybe freezing some things could help with that.…[Read more]

Gil,

I listened to my parents many years ago discuss what sort of life would be unacceptable to them and the ideas have stuck with me. Yes, we all love life and want as much of it as possible, but only so long as it is worth living. Quality of life becomes more important to me the older I get. I don’t relish the idea of what probably lies…[Read more]

There has been discussion about food aversion and appetite loss. Much is always said about eating a “healthy diet,” but does anyone else have problems with not even feeling inspired to cook anything at all for yourself? Those of you with a spouse or SO might have help with fixing meals. What about those who must do it for themselves? I just…[Read more]

Hello, Gil. You bring up an interesting point, one that somewhat colors my own thinking about having this disease. I have been ambivalent about transplant for some time and current conditions with COVID-19 still out there have added to my feeling that this is not the right choice for me. You may be in denial, but you may also have hit another…[Read more]

Hello, Mark and Barry.
I have also read the information that getting the flu shot in October is optimal, but this year there has been a question of whether or not there might not be enough flu vaccine left it we wait until late October. I don’t know if that is actually a possibility, but perhaps earlier is better, just in case? In any case, my…[Read more]

Hey, Susan (Howitt). I also have CPFE. Are you on meds for the fibrosis? I would love to compare notes with you if you don’t mind. You are the first person that I have come across with the same diagnosis. Would you consider contacting me? [email protected]
Karen

Until you have been diagnosed with something like this, it is hard to understand the denial a person feels. In the beginning I kept telling myself that if things got too bad I would just step in front of a bus rather than deal with it. Sounds stupid, I know, but facing our own mortality is just very difficult to do. Think about that. What…[Read more]

Jason, I am sorry to hear you have a family member who is dealing with this. I think you have probably hit it right when you ask if this is a form of denial. When you say she says it is not bad enough yet, that is a big clue. It might also be a question of cost. You don’t mention her age or her relationship to you. You also don’t say what meds…[Read more]